Reimagining hospice care — for the living

f the 23 years Doris Ann Price has battled metastatic breast cancer, this year has been particularly hard. She’d almost grown accustomed to the ebb and flow of remission and relapse when, this spring, her cancer invaded her neck so deeply that she lost the ability to swallow food.

A few weeks later, her oncologist told her that he’d run out of treatment options. When Price, 69, recalled the moment recently from her bed at a rehabilitation facility in Lincoln, Mass., her nearly constant smile curled into disgust.

“He said I’m hospice-appropriate,” she whispered.

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Hospice care includes end-of-life support from nurses, home-health aids, and others for people who are believed to have fewer than six months to live and who reject curative treatments. The care usually extends until death, and is free for people on Medicare.

Price grudgingly accepts her six-month prognosis, but she still wants to pursue potential cures.

In almost every area of oncology, and on an almost monthly basis, researchers unearth new possibilities for 11th-hour remissions. For the fraction of drugs that work, the resulting remissions are often short-lived, but some patients have used a succession of new drugs to survive for years.

Price hopes to follow that script, yet she also understands how desperate her situation has grown, and how much she needs hospice-like care. She requires nearly full-time support, but she has no one to accompany her when her husband, Aaron, works. (Her spot at a rehabilitation center was a temporary measure, while Aaron readied their former home in North Carolina for sale.)

In theory, Price — and patients like her — now have an option.

As of earlier this year, participants in Medicare’s Care Choices pilot program can receive home-hospice care while also pursuing curative treatments, as long as they have cancer, chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), or HIV, and as long as they are admitted to one of the nation’s 140 participating hospice programs.

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The experiment is designed to encourage more use of hospice care, which has been shown to improve a patient’s quality and quantity of life, but is still rejected by some patients and clinicians. Roughly half of the nation’s dying patients don’t receive hospice care at all, and those who do receive hospice care typically do so three weeks before dying.

In Price’s area, the statistics are even more puzzling. According to Hospice Analytics, a Colorado-based research firm, a lower percentage of patients in New England use hospice than in any other area of the country, and when they do, they’re closer to dying.

Medical experts refer to this as “underutilization,” and it has broad financial implications for the health care system because hospice patients spend less time in the hospital than others.

If patients can continue life-extending treatments while also receiving hospice care, the theory goes, they might choose hospice sooner. Price is a prime example, given her fierce determination to explore all possible treatment options, even when doctors were ready to be done with her care.

When her oncologist, who is also a renowned breast cancer researcher, told Price he had exhausted all treatment options, she suggested returning to a chemotherapy that had once kept her cancer at bay for several years. He initially resisted, but she pressured him until he agreed.

“It’s working” she said, looking around her hospital bed for wood to knock on.

The tumors in her neck have receded and if she continues to improve, she hopes to qualify for experimental treatments that are only now emerging from labs.

As Price prepares to leave the rehabilitation facility for her temporary home in southern New Hampshire, she knows her situation will be more precarious because she can’t support herself alone while her husband works, and they cannot afford a private nurse. The other option is a nursing home — which she tried once and abandoned because the care was so poor.

Could the Care Choices be the solution?

“I would definitely would prefer home hospice to being institutionalized,” Price said.

It could mean, she said, more time with Aaron, with whom she has shared 47 years of her life, and more time satisfying her “curiosity about what makes human beings tick.”

More time, she said, “exploring, experiencing, and enjoying life on earth!”

While the concept behind this experiment is certainly well based, the actual intervention pays the hospice a trivial amount 10% of what hospice would normally be paid to care for someone on home based level of care. While the patient can still receive drugs and DME from Medicare the backbone of hospice is the careful bio-psycho-social services provided to the patient and family. It’s hard to imagine how hospices can provide services worthy of a “hospice” brand with that level of reimbursement.

Will Hospice be reimbursed for the the “fighting for life” costs? Ie, chemotherapy/biologic rx, radiation therapy? Will the hopice benefit be discontinued if requires transport to acute care for admission facilities for treatment complications? Current reimbursement for hospice in my area is ~$150/day. That does not cover the cost of an ambulance trip to ER.